On November 14, 2007 our healthy and athletic son was diagnosed with advanced stage IV Burkit’s Lymphoma and Leukemia. This blog is a journal of his courageous journey as he battled this aggressive cancer. With the grace of God and the help of an incredible community, Tyler went into remission in August, 2009. He is now a strong and healthy student at The Ohio State University.

Sunday, July 4, 2010

The 4th of July

Bob Piniewski is a dear friend of mine.

And, although it has been a wonderful honor to know Bob, I sincerely wish our paths had never crossed. You see, our paths crossed for only one reason. Our sons, A.J. and Tyler, were both healthy and athletic teenagers when suddenly diagnosed with the same aggressive cancer.

Tyler is now cancer free. Some people have told me that I need to move on. They say I have become obsessed, and need to leave the cancer world behind. I really don't like the word "obsessed". I prefer "re-focused". You see, I know what cancer did to Tyler, and how hard he fought. And I remember the battles with the medical, insurance, and government establishments.

And I know something else. The same courage, fight, and strength went into A.J.'s battle. But A.J. did not survive. There are no promises or no sure fixes. The only answer is for all of us to fight, for all of us to stay focused.

At the 4th of July celebrations, take some time to look at all the kids. Try counting them. And then understand that 1 in every 300 will be diagnosed with cancer. The truth is that there is a cure. We just need to find it. We just need to stay focused. Actually, as I think about, maybe we simply need to become a little obsessed.

I took the following directly off of Bob's website this morning. I could not agree with him more...Today is the Fourth of July. Our country's birthday. And, thus, the start of our government.

What do you think our Founding Fathers would say about our country's priorities with regard to cancer funding for research? Would they ask why we don't protect children first?

Surely they would want to know why Congress won't fund the annual $30 million authorized by the Carolyn Pryce Walker Conquer Childhood Cancer Act, wouldn't you agree? And please, the "these economic times" excuse just wont cut it. Not when they see that projects like the following are fully funded, even though most satisfy at least two of these criteria:

• Requested by only one chamber of Congress;• Not specifically authorized;• Not competitively awarded;• Not requested by the President;• Greatly exceeds the President’s budget request or the previous year’s funding;• Not the subject of congressional hearings; or• Serves only a local or special interest.

$29,992,000 by Senate Appropriations Committee Ranking Member Thad Cochran (R-Miss.) for 27 projects, including: $4,000,000 for the Jamie Whitten Delta States Research Center, Stoneville; $1,500,000 for Berryman Institute, Jack Berryman Institute, Utah and Mississippi Agriculture and Forestry Experiment Station; $1,002,000 for Mississippi Valley State University, curriculum development; $939,000 for the Agricultural Wildlife Conservation Center; and $231,000 for e-commerce research, because no one knows how to go online.

$61,600,000 for 30 projects by Senate CJS Appropriations Subcommittee Ranking Member Richard Shelby (R-Ala.), including: $14,000,000 for the Cooperative Institute and Research Center for Southeast Weather and Hydrology at the University of Alabama; $6,000,000 for six projects for the Marshall Space Flight Center in Huntsville; $1,000,000 for the Tools for Tolerance program at the Simon Wiesenthal Center in Los Angeles,California; $250,000 for a wireless area network for the city of Hartselle (population 13,888); $200,000 for the Cherokee County Methamphetamine and Marijuana Reduction program; and $150,000 for Zelpha’s Cultural Development Corporation for the University of Alabama’s After-School Delinquency Prevention program

$93,900,000 for 25 projects by Senate Defense Appropriations Subcommittee member Robert Byrd (D-W.Va.), including: $10,000,000 for four earmarks for the Joint Interagency Training and Education Center; $8,000,000 for the Smart Sensor Supercomputing Center; $7,000,000 for the Robert C. ByrdInstitute of Advanced Flexible Manufacturing Systems [according to a February 28, 2010 herald-dispatch.com article, “The Robert C. Byrd Institute for Advanced Flexible Manufacturing (RCBI) is joining forces with Cabell County Career Technology Center (CCCTC) to offer evening welding classes to the Tri-State Area. It’s part of an effort enhance the pool of skilled workers available to industry

$7,690,000 for 14 projects by Senate Majority Leader Harry Reid (D-Nev.), including: $2,000,000 for construction at the California National Historic Trail Interpretive Center; $1,700,000 for the Water Research Foundation (at the end of 2007, it had a fund balance of $17 million); $350,000 for Lahontan cutthroat trout; and $200,000 for the Lincoln County Courthouse, Pioche. According to the Pioche Chamber of Commerce’s website, the city “enjoys old-west charm, mild summertime temperatures, fine trout fishing, hunting, and some of Nevada’s most scenic state parks. Pioche is an old town by western standards, with many of the buildings predating the turn of the 19th century. We are far enough from the beaten track to escape the blatant commercialism that has plagued many tourist towns, but yet we do have enough facilities to handle the modest summer crowds. Boot Hill, the million-dollar courthouse, the Thompson Opera House, and the town museum are must stops for visitors interested in the town’s past.”

$1,000,000 by Senate appropriator Mary Landrieu (D-La.) for the Sewall-Belmont House in Washington, D.C., which holds private events, offers catering, and is visited by tourists who are encouraged to leave donations.(Source - Citizens Against Public Waste - 2010 Congressional Pig Book Summary)

Maybe they would say something like this....

“Leave no authority existing not responsible to the people.”- Thomas Jefferson“He that is good for making excuses is seldom good for anything else”- Benjamin Franklin"As much as I converse with sages and heroes, they have very little of my love and admiration. I long for rural and domestic scene, for the warbling of birds and the prattling of my children”- John Adams“Ninety-nine percent of the failures come from people who have the habit of making excuses.”- George Washington“The truth is that all men having power ought to be mistrusted.”- James Madison“A promise must never be broken”- Alexander Hamilton

Well, they have. Broken a promise made to sick children. So, beyond voting 'em all out in the upcoming elections, let's raise funds ourselves.

Today, as you attend parties, visit friends, or meet someone new, please tell them a bit about childhood cancer. How it remains underfunded and under-recognized as the #1 killer disease of our children today. That's OUR children.

Chances are 1 in 300 that any child will be diagnosed with cancer before age 20. Chances are 20% that child will not survive five years. Of the 80% that do survive, 60% are impacted by the cure; resulting in long-term health risks included secondary cancers, major organ damage (not to mention minor organ damage), infertility as well as social and learning issues.

Today, simply ask one person to remember 46mommas.com. They can donate to this wonderful group of moms who will shave their heads in support of St. Baldrick's, funding childhood cancer research. So that in every future Fourth of July celebration, each 300 out of 300 of America's children can raise the flag...And please....“Don't say you don't have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michaelangelo, Mother Teresa, Leonardo daVinci, Thomas Jefferson, and Albert Einstein.” - H. Jackson Brown